‘Our daughters’ deaths could have been avoided’ – we need an allergy Tsar to stop this happening again

Natasha, only 15; Shante, one week short of her 19th birthday. Both healthy and happy teenage girls at the start of their lives – both dead because, unwittingly, they ate a food to which they were severely allergic.

In Natasha’s case the sesame seeds that killed her were not listed on the pack of the baguette that she ate. (Thanks to the tireless campaigning of her family, as of October this year a new law will ensure this omission does not occur again.) In Shante’s case a string of tragic errors on the part of the NHS and the ambulance staff both before and after she ate the hazelnut, resulted in her death.

To watch a really heart rending discussion between the girls’ mothers, of what went wrong log in here.

And it is the coroner’s report on Shante’s death released last year that has been the spur to a new campaign headed up by Tanya Ednan-Laperouse, Natasha’s mum, and Emma Turay, Shante’s mum. They are calling, via a Parliamentary petition, for the appointment of an allergy tsar to act as an allergy champion giving focus and direction to tackling the allergy epidemic which is sweeping the country.

As of now, the NHS is horrendously poorly equipped to tackle it.

Twenty five years ago I can remember writing a scandalised article about how there were only six specialist allergy clinics in the whole of the UK. Today, despite the 338% increase in the number of children children admitted to A&E with serious food allergy issues in that time, there are still only six specialist units. Meanwhile there is an ever more desperate shortage of allergy specialists and a shocking lack of the most basic allergy awareness in at Primary care level.

The coroner’s report into Shante’s death highlighted no less than 20 areas in which she had been failed by those who should have been managing her allergy or treating her allergic reaction. Worryingly, while there are instances of excellent care, this could be the situation in which far too many allergy sufferers find themselves. You can read the full report here but the most egregious failures include:

• While Shante’s GP knew about her allergies, they assumed that she was also being treated at a specialist allergy clinic when she wasn’t. They never checked.
• While the GP knew that she should carry two adrelanine injectors they did not ensure that she did, nor did they ensure that she was trained in how to use them. Worst of all, they failed to update her prescription from a child’s dose of 300mgs adrenaline to an adult dose of 500mgs. (The coroner noted that although the GP had failed in duty of care, there was no NICE guidance on allergy managment that they could have followed.)
• When Shante’s mother called 111 a catalogue of technical failures and human errors meant the wrong sort of ambulance was despatched, that the wrong address was given and the wrong advice was given to as to how and how much adrelanline should be administered. Had even one of those mistakes not occurred, Shante’s life might have been saved.

In an attempt to address at least some of these issues, the Natasha Allergy Research Foundation campaign is calling not just for an allergy tsar but for:

• An increase in the number of specialist allergy clinics – one in every part of the country
• The development of a National Register of Severe Allergic Reactions detailing all hospitalisations and fatalities, and a Near Misses Register of incidents. (The FSA is also working on a scheme, FARRM, to pull this information together – a crucial tool in creating a coordinated approach to better management of anaphylactic events.)
• That GP and hospital allergy services should become joined up so that patients have a coherent NHS care pathway.
• That more specialist allergy doctors and consultants should be trained and that training in allergies should be mandatory for all GPs.

Please do sign the NARF petition and please do promote both it and the campaign as widely as you are able.

Every new person, be they medical or lay, who understands about the seriousness of allergy, is one more person who might be able to step in to help save a life such as Natasha’s or Shante’s.

• For more details on the campaign go here.
• To sign the petition go here.
• To watch Tanya and Emma talking about their daughters, go here.